Hi everyone,
I realised I'd posted in another forum but didn't actually introduce myself here...
My Mum was diagnosed with inoperable Small Cell Lung Cancer in June 2017. The diagnosis was discovered through Mum having her appendix out and excruciating pain one day when she was admitted to hospital. During this time she went into anaphylactic shock as they gave her antibiotics she was allergic to - but that's a different story.
So the diagnosis - SCLC in the lung. Contained. She underwent chemotherapy for a number of weeks, followed by radiotherapy to the chest. Chemo was fine, radiotherapy made her poorly. She couldn't eat due to esophagus pain and was mainly on liquids - even at our family Christmas dinner. It wasn't a good time but the scan came back that the treatment was working and shrinking the cancer. Until eventually, it had pretty much eradicated it completely - the scan just showed scarring. HAPPY DAYS.
Until a few weeks ago.
Mum was having 3-monthly scans just to make sure the cancer hadn't reared its ugly head. This month, her regular scan was booked in for a Monday. I'd visited on the weekend to come with her this time. On the Saturday just before, she took a drive to look at cars at a garage on her own. She then phoned me to say she had fell, not fainted, but kind of lost her feet beneath her and was trying to scramble around on the floor for her keys and felt 'off'. Not with it.
I asked her to go to hospital but she wasn't having any of it, saying she was just tired.
On Monday, the day of the scan, I took Mum and as she got out of my car she said she didn't feel right - like she was going to pass out. I held her up and could see in her eyes she wasn't all there. I put her in the wheelchair and we went to find her consulant. Luckily she was there with no other patient in her office and demanded that the CT scan was taken higher, as in, to include the head too - as the symptoms she explained were typical of brain mets, that the cancer had made its way to the brain.
Lo and behold it came back that yes, the SCLC had metastasized to the brain. There was one lesion there. Pretty sizeable. And so she was referred to the neurosurgeon to discuss next steps and treatment.
No driving for at least 6 months, then she'll need to reapply to the DVLA - this broke my Mum. She loves driving, it gives her the independence she wants to lead a fairly 'normal' life as much as possible.
Her whole brain radiotherapy to target the lesion on the brain starts w/c 5th November. 5 sessions Mon to Fri. As chest radiotherapy really hit her hard, I'm incredibly worried about the WBRT. She's already becoming more and more forgetful and feeling out of it due to the edema around the cancer adding pressure.
I live 2.5 hours away from Mum and so my work have been great in letting me work from hers with my work laptop and giving me a few days compassionate leave. I'm taking annual leave next week for the radiotherapy as I expect she will need even more care and support. I don't want her to be on her own. She has family round her but keeps insisting she's fine at home on her own. She says when people pander to her, she feels even more on edge.
I know I am going to lose my Mum to this. I just don't know when. Personally I have a Generalised Anxiety Disorder and take medication for this so as someone who is always organised and prepared, the not knowing is really eating me up inside, so much so that I feel sick. But I'm putting a brave face on for Mum and trying to stay strong. I'm also trying to look after myself as much as I can because you can't pour from an empty cup - though I feel guilty about that.
We haven't spoken about 'final days'. We haven't even asked for a prognosis. Should we ask? Or do we take each day as it comes and make the most of them?
My Mum is my best friend. I already feel like I am grieving. I won't know what to do without her.
Thank you all for listening.
Jodie.
(Mum diagnosed with SCLC June 2017. Oct 2018 no evidence of cancer in lung. One brain lesion (brain mets). Undergoing radiotherapy w/c 5th Nov 2018.)
